The hardest lesson I learned from autism advocacy is that the problem may not be choosing the wrong partner. Sometimes the role itself offers very little power. An organisation may value an autistic person without valuing autistic influence. It may want our presence, diagnosis, story or apparent agreement more than our judgement. In that situation, we are not being engaged to change the work. Inclusion is itself the product.
What is the organisation buying?
The market is governed by supply and demand, not by how important we believe our contribution ought to be.
General autism information is already abundant online, much of it available free of charge. In the age of generative AI, organisations can also produce competent articles, summaries and presentations quickly. AI cannot possess lived experience, but it makes generic advocacy content less scarce.
What remains scarce is a live autistic person who can appear at an event, tell a personal story, be photographed and make inclusion visible.
If representation is the real product, organisations are likely to favour people with speaking experience, prestigious qualifications, predictable conduct and low perceived reputational risk. These qualities may help an advocate obtain more invitations. They do not necessarily provide greater influence.
A highly qualified autistic person may therefore be valued mainly because a title and diagnosis create a reassuring inclusion signal. The organisation may not need that person’s specialist knowledge. A more independent or critical advocate may even be less attractive if the actual purpose is reassurance rather than challenge.
Support for a different role
In my attempts to develop autism initiatives, I received expressions of support, but these were largely verbal. They did not translate into the practical backing needed to develop the work. Being publicly described as supported was different from having people help make the initiative happen.
There was also a mismatch between the work I wanted to provide and the opportunities available. When I tried to develop coaching for autistic adults, the few opportunities I obtained for working directly with them involved accompanying them on outdoor activities, mainly providing supervision and companionship. Those activities could be worthwhile, but they were not the coaching I had planned.
In the circles I approached, I came to believe that autistic people were more readily recognised as recipients of support than as people who could also design and provide solutions. There was room for my involvement in existing support arrangements, but much less backing for the role I was trying to develop.
The distinction matters. Support for my involvement did not necessarily mean support for my proposed work. A befriending role does not automatically become a coaching role through persistence. That requires agreement on the coaching itself, what the participants want from it and how it will be supported.
Where that agreement is absent, choosing work I can deliver independently may serve the purpose better than hoping that more befriending opportunities will eventually establish a coaching role.
The missing role in Singapore
From what is publicly documented, Singapore’s autism services appear to place most operational work in the hands of educators, clinicians and autism consultants. Autistic adults are more visible as beneficiaries, speakers, consultees and symbols of inclusion.
Autism Resource Centre’s training and consultancy service, for example, describes consultants coaching professionals, developing curricula and supporting school operations. A 2021 Singapore study still had to recommend that autistic people be involved in professional training and engaged as equal partners in leadership, policy and research.
The Autism Enabling Masterplan also recommended that trainers and consultants should include people on the spectrum. The recommendation recognises the possibility, but does not show that such involvement has become routine.
This does not prove that no autistic teachers, therapists or consultants exist. Their diagnoses may be private. Nor should an advocate be allowed to direct a classroom or therapy programme merely because they are autistic: these are professional responsibilities requiring relevant competence, safeguards and accountability.
The missing middle is a structured role in which autistic people work alongside professionals to identify problems, test accommodations, review policies and curricula, train staff and evaluate whether changes actually work.
Why bargaining power remains weak
Bargaining power comes from what the other party cannot easily replace. If an organisation only needs an autistic person to appear and speak safely, many advocates may be suitable substitutes.
In that market, becoming a better advocate may not produce greater power. Better arguments are irrelevant when the organisation is not buying analysis. Specialist knowledge may be unwanted when the organisation is not seeking operational change.
Substantive bargaining power would require a different transaction:
- being hired for relevant professional work with defined deliverables;
- bringing original evidence, implementation ability or a mandate from a defined group;
- having written authority to influence decisions and review final claims;
- negotiating collectively rather than as an isolated individual; or
- remaining financially independent enough to walk away.
Where none of these exists, the honest choices are limited. We can accept a clearly defined representational role, refuse it, or pursue our mission through a profession or organisation that genuinely needs our capabilities.
When inclusion becomes a Faustian bargain
A paid speaking or ambassador role is not automatically exploitative. Representation is a real service and should not be expected for free.
The ethical problem begins when money, prestige or access is exchanged for something that was never stated openly: silence, automatic agreement, control of our story, or permission to suggest that we approved work we could not influence.
Before accepting, I would ask:
- Are they buying my labour, expertise, story, diagnosis, prestige or endorsement?
- What decisions can I actually influence?
- Would they still engage me if I reached an inconvenient conclusion?
- What may they publicly claim because I participated?
- Can I describe my limited role just as openly as the organisation describes its inclusion?
If the organisation is merely renting my presence, I need to decide whether that transaction is compatible with my values. I should not confuse it with partnership, co-design or professional authority.
This is also why I would not make autism advocacy responsible for feeding me. Financial dependence makes it harder to reject symbolic roles, challenge misleading claims or leave when the ethical price becomes too high. Advocacy can be serious and fairly paid while remaining economically optional.
Autistic presence proves attendance, not influence. If an organisation wants a symbol, no amount of advocacy skill will turn that role into power. Our strongest bargaining position may be the freedom to recognise the deal, describe it honestly and refuse it if it goes against our values.